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Some Dementia Can Be Treated, But My Mother Waited 10 Years For A Diagnosishttp://kaiserhealthnews.org/news/doctors-can-treat-this-form-of-dementia-but-my-mother-didnt-get-a-diagnosis-for-nearly-10-years/
http://kaiserhealthnews.org/news/doctors-can-treat-this-form-of-dementia-but-my-mother-didnt-get-a-diagnosis-for-nearly-10-years/#commentsTue, 03 Mar 2015 10:00:47 +0000http://kaiserhealthnews.org/?p=524497]]>When my mother, Pauline, was 70, she lost her sense of balance. She started walking with an odd shuffling gait, taking short steps and barely lifting her feet off the ground. She often took my hand, holding it and squeezing my fingers.

Pauline Rabin with granddaughters Emma and Aviva Rabin-Court near the C&O Canal in Great Falls, Md. (Photo courtesy of Roni Rabin).

Her decline was precipitous. She fell repeatedly. She stopped driving and she could no longer ride her bike in a straight line along the C& O Canal. The woman who taught me the sidestroke couldn’t even stand in the shallow end of the pool. “I feel like I’m drowning,” she’d say.

A retired psychiatrist, my mother had numerous advantages — education, resources and insurance — but still, getting the right diagnosis took nearly 10 years. Each expert saw the problem through the narrow prism of their own specialty. Surgeons recommended surgery. Neurologists screened for common incurable conditions.

The answer was under their noses, in my mother’s hunches and her family history. But it took a long time before someone connected the dots. My mother was using a walker by the time she was told she had a rare condition that causes gait problems and cognitive loss, and is one of the few treatable forms of dementia.

“This should be one of the first things physicians look for in an older person,” my mother said recently. “You can actually do something about it.”

‘Did Mom Tell You? She Fell Again.’

The falls started in 2004. My mother fell in the bedroom of her Bethesda home. She fell in the airport while returning from a trip to see my sister. Sometimes she told me, and sometimes a sibling would call or e-mail. “Did Mom tell you? She fell again.”

Millions of older adults fall every year, but it was my mother’s uneven gait that tripped her up. She was unsteady on her feet; the slightest incline threw her off stride. Sometimes she quickened her pace involuntarily. Sometimes she bent over before straightening back up.

She went to doctor after doctor. “I want a diagnosis,” she would say before the next appointment with a neurologist, geriatrician, urologist or orthopedist. “I’m convinced this is something organic — that it has an underlying biological cause.”

A series of neurological evaluations ruled out the obvious suspects: My mother didn’t have the tremor typical of Parkinson’s, a devastating, progressive disorder, and she did well on cognitive tests, so it wasn’t Alzheimer’s disease.

Next, my mother went to see an orthopedic surgeon. He said she had stenosis, or a narrowing of the open spaces of the spine, and recommended surgery. She underwent a complicated, potentially dangerous back operation, and she seemed to be walking more smoothly afterward — for a few months.

As time went by, though, she developed other symptoms. Perhaps because she wasn’t exercising, her blood pressure went up. She gained weight and was at risk for diabetes. She developed a persistent hacking cough, but no one could identify the cause since her lungs were clear.

She was also having trouble getting to the bathroom on time, so she had more surgery, this time to implant mesh designed to alleviate urinary incontinence. Medicare and private insurance picked up the tab, but once again the relief was temporary.

The bad news was that it had taken so long to get the diagnosis that some of the damage may be irreversible.

My mother had always been terrified she would lose her memory. Her mother, Helen, who died in 1988, had spent the last five years of her life bedridden, unable to walk and oblivious to her surroundings. Any physician who took a careful family history would know that my mother suspected Helen’s dementia was caused by normal pressure hydrocephalus, or NPH, a buildup of cerebrospinal fluid in the brain that causes difficulty walking, urinary incontinence and cognitive loss, in that order.

When my mother met with specialists, she floated the idea that she might have NPH. In some ways, she hoped that was the diagnosis, because it often can be treated by implanting a small shunt into the brain to drain off the excess fluid.

Around this time, another neurological evaluation that included MRI scans of the brain revealed that my mother had enlarged ventricles. Ventricles are the cavities in the brain that are filled with cerebrospinal fluid, and their enlargement suggested any number of conditions, including brain atrophy and Parkinson’s. They are also considered a red flag for NPH.

A neurologist in Bethesda had briefly considered NPH. He had done a spinal tap to withdraw a small amount of cerebrospinal fluid but ruled out the diagnosis when he saw no immediate improvement in my mother’s gait. But he may not have withdrawn enough fluid to see a change, experts told me.

One feature of NPH is passivity. My mother was forgetful at times, but what was more striking was her lack of initiative. She didn’t make plans as she used to. She’d start a knitting project and drop it. She may have been less aggressive than normal about pursuing her hunch about NPH being the source of her trouble. “One doctor told me, ‘This doesn’t run in families,’ ” she said.

‘We Believe It’s Overhyped’

Two years ago, doctors finally got it right.

My mother and stepfather had gone to visit friends in Gainesville, Fla. They urged her to make an appointment at the University of Florida’s Center for Movement Disorders and Neurorestoration. Doctors there suspected NPH as soon as they saw my mother walk across the room. They recognized the shuffling gait and what they call “magnetic” footsteps that seemed glued to the floor.

They sent her for additional tests, including a spinal tap to see if her walking improved after a large amount of cerebrospinal fluid was withdrawn — it did — and another imaging scan to rule out the possibility that the buildup was caused by an obstruction, such as a tumor.

Pauline Rabin surrounded by her grandchildren at her 80th birthday after her operation (Rabin Family Photo).

Inserting a shunt is a dangerous operation: A thin tube is implanted in the brain to drain excess cerebrospinal fluid and release it into the abdomen.

“For some patients, [the surgery] can be life-changing,” said Michael Okun of the movement disorders center. But it is a high-risk operation, he said, especially in the elderly. About a third of patients who have shunt surgery experience a complication, such as an infection or a brain bleed that can lead to brain damage or death. “You have to be careful. A lot of people are shunted inappropriately,” Okun said.

Why was my mother’s diagnosis missed by so many, and for so long?

A friend whose mother was diagnosed with NPH by a gerontologist early on in the course of her disease told me the doctor made the diagnosis after seeing a story about NPH on “60 Minutes.”

But for many physicians, “the possibility just doesn’t come to mind,” said Michael Williams, who serves on the medical advisory board of the Hydrocephalus Association, an advocacy organization, because it’s so rare.

Physicians are trained to search for the most obvious, common conditions first. Although NPH was first described in 1965 and is taught in medical schools, the diagnosis is controversial, even contentious. There is no definitive test, and some experts have questioned whether it is a real syndrome. Studies of patients who had shunts inserted have had mixed results, and randomized controlled studies will probably never be done, both for logistical and ethical reasons.

Daniele Rigamonti, a neurosurgeon at Johns Hopkins School of Medicine who wrote and edited a textbook about NPH, is convinced that it is underdiagnosed and that many nursing home residents who seem to have Alzheimer’s or Parkinsons’ dementia may actually have NPH. He says it’s important to diagnose it early, before the buildup of pressure on the brain causes damage as the enlarged ventricles displace and compress adjacent brain tissue.

“To wait for the full triad [of symptoms] is foolish,” he said, referring to the three symptoms that define NPH: gait disturbance, incontinence and dementia. Even though it is a challenge to diagnose NPH when the only symptom is gait impairment, he said, “you don’t wait for a cancer to metastasize and spread to the brain before you recognize it.”

Bryan Klassen, an assistant professor of neurology at Mayo Clinic, is not convinced. He contends NPH is extremely rare and is not being missed.

“We believe it’s overhyped,” he said, adding that the surgery is dangerous, “and a lot of the time the results are underwhelming.”

Lasting Improvements

My mother had shunt surgery two years ago, when she was 79 years old. The surgery lasted less than an hour and a half. I’m only writing about it now because surgical interventions, like sugar pills, can have placebo effects that don’t last very long. But I noticed a change immediately.

My mother went home the day after surgery, and my stepfather brought flowers. And then my mother did something that she hadn’t done in years: She walked over to the kitchen counter, gently removed the flowers from the paper wrapping, clipped and cut the stems and arranged them in a vase in a striking arrangement. She had always had a flair for flower arranging but hadn’t seemed interested for quite a while.

Today she is dramatically improved; her walking, memory and concentration are all better. Still, I can’t help wondering: Did the delayed diagnosis result in some permanent cognitive impairment?

She’s much less passive and can actually be very persistent. She asked me to write this article to inform people about NPH. “Have you written the article yet?” she asked recently when I called. “Please, write it.”

KHN’s coverage of aging and long term care issues is supported in part by a grant from The SCAN Foundation.

BAYOU LA BATRE, Ala. — Bayou La Batre calls itself the seafood capital of Alabama. Residents here depend on fishing and shrimping for their livelihood, and when they sit down to eat, they like most things fried.

It’s here that former U.S. Surgeon General Dr. Regina Benjamin has been trying to reverse the nation’s obesity epidemic one patient at a time. Benjamin grew up near Bayou La Batre and has run a health clinic in this town of seafood workers and ship builders since 1990. As obesity became commonplace around the U.S., health care providers like Benjamin began seeing the impacts of obesity all around them.

“We saw our patient population get heavier,” Benjamin said. “We saw chronic diseases start to rise, and if we continued, our entire community would totally be crippled, basically, based on chronic diseases.”

Two major trends are on a collision course here, as in the rest of the United States: a decades-long surge in obesity and the aging of the U.S. population. Today, one out of every three adults in the U.S. are clinically obese, and many who have lived for decades with excess weight, diabetes and heart disease are now heading into their senior years. Obese people are far more likely to become sick or disabled as they age, and researchers say this burgeoning demographic will strain hospitals and nursing homes.

“We’re potentially going to have a larger, older population that’s more likely to be obese, surviving longer with cardiovascular disease and other chronic diseases,” said Dr. Virginia Chang, a demographer at New York University. “I think that the primary fallout from increasing obesity is probably not going to be some huge hit to mortality. It’s going to be disability.”

Those consequences may already be visible, researchers say. Lifelong obesity, now common across the country, is poised to undermine improvements in disability rates among older adults.

Steven Austad, chairman of the biology department at the University of Alabama at Birmingham, studies the effects of diet and nutrition on aging using mice. He says researchers used to think that aging was driven by different processes. “Your heart aged, your brain aged, your feet aged,” he said. “But now, we’ve realized, there’s a handful of processes that are involved in aging all parts of your body. And it turns out, one of those processes is inflammation.”

Inflammation naturally increases as we age, but that process is exacerbated by belly fat, which secretes chemicals that cause further inflammation around the body. “If you’re obese, then your system-wide levels of inflammation are higher, particularly when you get older,” said Austad.

That’s one reason scientists think men and women who are obese are more likely to develop dementia, Alzheimer’s disease and certain cancers as they age.

Bob Parker, a Birmingham area resident, says his own weight is starting to catch up with him. As a realtor and Democratic party activist, he often attends meetings at restaurants and says all those nights dining out make it hard to eat well. Now, at age 60, he’s being treated for diabetes, high blood pressure, high cholesterol and sleep apnea. He’s lost 90 pounds—twice—and gained it back. “It’s taken some energy away, for sure,” Parker said of his weight. “I like to do things out in the yard and I just can’t work on them as much. So, that’s pretty galling to be honest.”

Obesity is an expensive disease, especially for aging seniors. One study found that while obese 70-year-olds live as long as healthy weight 70-year-olds, they will spend $39,000 more on health care. “Obese people have higher healthcare costs than non-obese people. This is true virtually throughout life,” said David Allison, director of the Nutrition Obesity Research Center at the University of Alabama at Birmingham. As a person gets into the age when health care spending goes up, “that difference is going to be bigger and bigger and more and more important.”

In part because of disability and poor health, surveys show more obese people are heading into nursing homes at younger ages and staying longer than non-obese residents. Two hours from Birmingham, in the northwest corner of the state, Generations of Red Bay is one of the only nursing homes in the region that is willing to take on the added expense of caring for heavier residents. Patients come from as far away as Texas.

Margaret Hilldouglas arrived here two years ago, at age 47, after she broke her knee. Surgery was considered too risky because of her congestive heart failure, so she languished in a hospital for weeks while a social worker looked for a nursing home that would accept her.

Patients like Hilldouglas require additional staff and costly equipment, including specialized beds, mechanical lifts, larger blood pressure cuffs and longer needles, said Aundrea Fuller, chief operating officer of Generations of Red Bay. “There are two certified nursing assistants for eight to ten residents. And that’s about twice the staffing that you would have for the general population of a skilled nursing facility.” Most of the obese residents that move in here, even the younger ones, will need this type of care for the rest of their lives, Fuller said.

At the University of Alabama at Birmingham’s weight loss clinic, Bernard Rayford, 55, said he wants to avoid that fate. “I’ve always prayed, Lord, before I be a burden, just take me. I saw myself being a burden, and me being a major problem,” Rayford said after a vigorous workout in the clinic’s gym. “The end was for me not to make it. Or for me to end up being in an ambulance. And that’s, that’s the direction I don’t want to be in.”

KHN’s coverage of aging and long term care issues is supported in part by a grant from The SCAN Foundation.

]]>http://kaiserhealthnews.org/news/the-extra-cost-of-extra-weight-for-older-adults/feed/0shutterstock_157800122khnsarahvlogo daily beast 18State Highlights: Calif. Attorney General Approves Hospital Sale; N.Y. Fights Fraud With Datahttp://kaiserhealthnews.org/morning-breakout/state-highlights-calif-attorney-general-approves-hospital-sale-n-y-fights-fraud-with-data/
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http://kaiserhealthnews.org/news/few-seniors-benefitting-from-medicare-obesity-counseling/#commentsMon, 23 Feb 2015 13:50:24 +0000http://kaiserhealthnews.org/?p=522516]]>VISALIA, Calif. — In the farming town of Exeter, deep in California’s Central Valley, Anne Roberson walks a quarter mile down the road each day to her mailbox. Her walk and housekeeping chores are the 68-year-old’s only exercise, and her weight has remained stubbornly over 200 pounds for some time now.

“You get to a certain point in your life and you say, ‘What’s the use?’”

Dr. Mylene Middleton Rucker, a primary care physician in Visalia, Calif., is using the new obesity counseling benefit with her patients, but many doctors aren’t aware of it yet. (Sarah Varney/KHN)

To help the 13 million obese seniors in the U.S., the Affordable Care Act included a new Medicare benefit offering face-to-face weight-loss counseling in primary care doctors’ offices. Doctors are paid to provide the service, which is free to obese patients , with no co-pay. But only 50,000 seniors participated in 2013, the latest year for which data is available.

“We think it’s the perfect storm of several factors,” says Dr. Scott Kahan, an obesity medicine specialist at George Washington University. Kahan says obese patients and doctors aren’t aware of the benefit, and doctors who want to intervene are often reluctant to do so. It’s a touchy subject to bring up, and some hold outmoded beliefs about weight problems and the elderly.

“It used to be thought that older patients don’t respond to treatment for obesity as well as younger patients,” Kahan says. “People assume that they couldn’t exercise as much or for whatever reason they couldn’t stick to diets as well. But we’ve disproven that.”

This KHN story also ran on NPR. It can be republished for free (details).

Indeed, one study found two out of three older patients lost 5 percent or more of their initial weight and kept it off for two years.

Weight loss specialists place the blame for poor awareness of the new benefit on the federal government’s decision to limit counseling to primary care offices.

“The problem with using only primary care providers,” says Bonnie Modugno, a registered dietician in Santa Monica, California, “is that they completely ruled out direct reimbursement for the population of providers who are uniquely qualified and experienced working with weight management. I think that was a big mistake.” She was referring to registered dieticians like herself, as well as specialists such as endocrinologists, who might be managing a person’s diabetes, and cardiologists, who monitor patients with heart disease. Both conditions can be caused by or made worse by excess weight.

The drafters of the health law deliberately wrote the benefit narrowly out of concerns about widespread fraud, if charlatans were able to bill Medicare for obesity counseling. Modugno says she is sympathetic to that concern, but it is too restrictive as enacted.

“Unless we change the nature of how…the counseling occurs, I don’t see it being available to people in a meaningful way,” said Modugno.

As for Anne Roberson, she says the extra weight she has long carried on her petite frame has begun taking a toll on her joints, her sleep and her mood. On a recent morning, Roberson listened politely to her longtime physician, Dr. Mylene Middleton Rucker, during her first Medicare weight-loss counseling session. Rucker suggested she eat more vegetables and less meat and encouraged her to join an exercise class.

Rucker, who is obese herself, says she doesn’t expect her older patients to lose a lot of weight. “I think you’ll see weight loss of 10 to 20 pounds, but whether you’re going to see people lose 50 to 100 pounds as they’re older, I doubt it.”. Still, Rucker says, even with small amounts of weight loss in her older patients, she expects to see a decrease in the complications of chronic medical diseases, including diabetes-related leg amputations.

Roberson says she has tried to lose weight before, but “you hit a couple of rough weeks and you kinda slough off.” This time, Roberson says firmly, she will have to come back and answer to Rucker.

KHN’s coverage of aging and long term care issues is supported in part by a grant from The SCAN Foundation.